INTRODUCTION:

Parents and caregivers make sure children are healthy and safe, equip them with the skills and resources to succeed as adults, and transmit basic cultural values to them. Parents and caregivers offer their children love, acceptance, appreciation, encouragement, and guidance. They provide the most intimate context for the nurturing and protection of children as they develop their personalities and identities and also as they mature physically, cognitively, emotionally, and socially.¹

Parents of children with ASD often feel strained by care giving. Meeting the high care demands of affected children require much time, effort and patience. This often results in psychological distress, depression, anxiety and other mental and physical health problems among parents.²

Autism is a severely debilitating developmental disorder with potentially harmful effects on the entire family. It is a chronic disability that appears in all racial, ethnic, cultural and socialbackgrounds around the world and is more common than childhood cancer, cystic fibrosis and multiple sclerosis. Because of the severity of the disorder, many families struggle to come to terms with their child’s diagnosis and to adjust to having a child with special needs in their home.³

Family resilience is the successful coping of family members under adversity that enables parents/ care givers to flourish with warmth, support, and cohesion. Prominent factors of resilient families include: positive outlook, spirituality, family member accord, flexibility, family communication, financial management, family time, shared recreation, routines and rituals, and support networks.⁴

A family’s level of adaptation is associated with the extent to which families find support in the communities in which they live. Social support is an important resource in alleviating the difficulties associated with having a chronic stressor, such as an autistic child, in the home, and promoting successful adaptation. Social support has also been associated with positive family and child outcomes in families with an autistic child.³

There is link between social support and individual resilience. High social support may promote behaviors that improve stress regulation. High social support can increase self confidence, decrease the likelihood of engaging in risky behaviors and foster more effective coping strategies such as active problem solving.⁵

MATERIAL AND METHOD:

A cross- sectional descriptive study has been conducted to assess family resilience and perceived social support among care givers of children with autistic spectrum disorder. The conceptual framework used to guide this study was the “Stuart Stress Adaptation Model of Psychiatric Nursing”. Purposive sampling was used to select the study subjects. Power sampling was used to determine how big sample was needed for desired alpha at 0.05 with power of 0.80 and 61 care givers were selected. Family resilience interview schedule (consisted of 30 statements) and perceived social support assessment scale (consisted of 20 statements) were developed and used to assess family resilience and perceived social support among care givers of children with autistic spectrum disorder. Tools were prepared in English and Hindi. Experts from the field of Psychiatric nursing, community medicine, occupational therapy and psychology determined the content validity of the tools. Reliability of scales was computed where both the tools were found to be reliable with P= 0.75 (for family resilience interview schedule) and P= 0.9 (for social support assessment scale). Family resilience and perceived social support assessment scale responses allow subjects to give their agreement on a continuum (Always=5, usually=4, sometimes=3, rarely=2, and never=1). Ethical clearance was obtained from institutional ethics committee of Saraswati Nursing institute Kurali. Written informed consent was taken from the subjects of study. Anonymity of subjects were assured by assigning code for them. All the subjects were informed that their participation is completely voluntary. Study was conducted in the month of Jan 2017. Data was analysed by using SPSS V.22. Data was collected from the selected therapeutic center RCHC, PRAYAAS from 12/1/2017 to 29/1/2017. Those coming to OPD and having their children with Autistic Spectrum Disorder were interviewed. The purpose of study was explained to the subjects and confidentiality was assured to all the subjects.

RESULTS:

Table 1- Percentage distribution of the care givers according to their socio demographic characteristics. N=61

Socio-Demographic characteristics		F (%)
Age	18-25 Years	01(1.6)
	26-35 Years	26(42.6)
	36-45 Years	31(50.8)
	46-55 Years	03(4.9)
Gender	Male	23(37.7)
Gender	Female	38(62.3)
Education	No formal education	01(1.6)
	Primary (upto 5th)	03(4.9)
	Secondary (upto 10th)	07(11.5)
	Senior Secondary (upto 12th)	12(19.7)
	Graduation and above	38(62.3)
Religion	Hindu	47(77)
	Sikh	11(18)
	Muslim	02(3.3)
	Christian	01(1.6)
Type of family	Nuclear family	34(55.7)
Type of family	Joint family	27(44.3)
Occupation	Government Job	9(14.8)
	Private Job	11(18)
	Business	4(6.6)
	Self Employed	7(11.5)
	Any Other	30(49.2)
Marital status	Married	61(100)
Relation with child	Mother	39(63.9)
Relation with child	Father	22(36.1)
Income (Monthly)	Less than 10000 /-	10(16.4)
	10001- 20000 /-	18(29.5)
	20001-30000 /-	9(14.8)
	30001-40000 /-	5(8.2)
	Above 40000 /-	19(31.1)

Table 1-Continued

Socio-Demographic characteristics		f (%)
Family history of autistic spectrum disorder	Yes	3(4.9)
Family history of autistic spectrum disorder	No	58(95.1)
Drug used by mother in antenatal period	Yes	5(8.2)
Drug used by mother in antenatal period	No	56(91.8%)
Medical illness	Yes	3(4.9)
Medical illness	No	58(95.1)
Psychological health problem	Yes	25(41.0)
Psychological health problem	No	36(59.0)

Table 2-Percentage distribution of children according to their demographic characteristics. N=61

Demographic characteristics		f (%)
Age	2-5 Years	35(57.4)
	6-9 Years	17(27.9)
	10-13 Years	7(11.5)
	14-17 Years	2(3.3)
Gender	Male	50(82)
Gender	Female	11(18)
Schooling	Special School	17(27.9)
	Ordinary School	31(50.8)
	No School	13(21.3)
Birth place	Hospital	57(93.4)
Birth place	Home	4(6.6)
Birth order of child	First	31(50.8)
	Second	28(45.9)
	Third	2(3.3)
Medical Diagnosis	Childhood Autism	60(98.4)
Medical Diagnosis	Asperger's Syndrome	1(1.6)
Age of child at the time of diagnosis	1-4 Years	52(85.2)
	5-8 Years	8(13.1)
	9-12 Years	1(1.6)
Duration in therapeutic center	Less Than One Year	36(59)
	1-3 Years	21(34.4)
	Above Three Years	4(6.6)
Major area of functional disability	Speech	48(78.6)
	Cognition	21(33.3)
	Behavioral	53(86.8)
	Psychosocial	24(39.3)

Table 3- Percentage distribution of children with their functional disability N=61

	Variables	Functional disability	f (%)
Major area of functional dysfunction	Speech	Sluttering	12(19.6)
		Difficulty in pronouncing sounds	2(3.7)
		Less speech	29(47.54)
		Mute	3(4.9)
	Cognition	Learning disability	7(11.47)
		Delay response	6(9.8)
		Distraction	9(14.7)
		Delay understanding	15(24.5)
	Behavior	Hyperactivity	26(42.62)
		Compulsive behavior	20(32.7)
		Echolalia	21(34.42)
		Temper tantrum	17(27.8)
		Thumb sucking	4(6.55)
		Self harm	3(4.91)
		Inappropriate social interaction	5(8.1)
	Psychosocial	Egocentric	4(6.55)
		Ignorance	1(1.63)
		Social isolation	19(31.1)
		Apathy	3(491)

Table 4-Mean, SD, mean percentage score of perceived family resilience among families of children with autistic spectrum disorder. N=61

Domain	Mean± SD	Mean percentage	Maxi-mum	Mini-mum
Optimism	26.59±3.456	88.63	30	18
Altruism	17.84±3.313	71.34	25	11
Moral Compass	23.77±2.980	79.23	29	15
Faith and Spirituality	23.16±3.451	77.21	30	12
Humor/ Entertainment	24.77±3.452	82.57	30	16
Having a role model	24.90±4.714	83.01	30	7
Social Support	25.31±4.511	72.32	35	15
Facing Fear	28.84±3.426	82.39	35	16
Meaning in Life	24.41±3.451	81.37	30	11
Training	18.67±2.942	74.69	24	9
Overall	238.26±17.40	79.4

Table 5 - Mean, SD, mean percentage score of perceived social support used by families of children with autistic spectrum disorder. N-61

Perceived

Social Support

Mean ±

Mean percentage

Maximum score

Minimum score

72.15±

13.95

100

Table 6- Correlation between family resilience and perceived social support among families of children with autistic spectrum disorder. N=61

Tools

Mean±SD

Correlation

Significant

Family Resilience

238.26±17.404

0.302

0.018 ^*

Perceived Social Support

72.15±13.950

Table 6 shows that there is statistically significant positive correlation between family resilience and perceived social support among families of children with autistic spectrum disorder (p<0.05).

Table 7 depicts that there were significant association observed between family resilience and major area of functional disabilities among children (0.022^*) and there were no association observed with other variables such as age, gender, schooling, birth place, birth order, medical diagnosis, duration in therapeutic center, and treatment (current).

Table 8depicts that social support was significantly associated with family income (0.048*) and drug used by mother in antenatal period (0.022*).There were no association observed with other significant variables such as age, gender, education, religion, type of family, occupation, relation with child, family history of ASD, medical illness, and psychological health problem.

DISCUSSION:

The current study focused on to assess family resilience and perceived social support among families of children with autistic spectrum disorder, visiting selected therapeutic centers or special schools of Chandigarh and Mohali. Non experimental research approach was adopted. Data was collected from 61 care givers visiting RCHC (Rehabilitation Centre for Handicapped Children) PRAYAAS, situated at 38 B Chandigarh using purposive sampling technique. Throughout the study, due care was taken to minimize bias and enhance the validity of the study findings. Present study has strong methodology that has improved on those used in previous research in this area.

In present study 77.21% families give importance to faith and spirituality. Finding is consistent with the study done by Heydari A, Shahidi HL, Mohammadpour A (2015)⁶ reported that caring for the autistic children led mothers’ lives to raise spirituality and enabled them to help their children and themselves.

Present study revealed that care givers adapt authoritarian parenting parenting style 75%. Finding is consistent with study done by Tripathi.N (2015)⁷reported that authoritarian parenting style was used by parents with children having severe form autism spectrum disorder.

Study revealed that care giver’s family show togetherness and adaptation 76%. Finding is consistent with study done by Kapp L, Brown O (2014)⁸reported that social support, the spousal relationship, and family time, togetherness and routines were the most important resilience-promoting factors with ASD.

In present study families seek support and involvement of other 41%.Similar findings were observed in a study conducted by N Ruiz, Robledillo, Garcia DS, Blasco PJ, Bono GE, Albiol ML (2014)⁹ in which social support was positively related to resilience. In present study families feel relaxed (83.6%) when their friends show empathy and there was significant association between perceived social support and income of family. Similar findings were observed in a study conducted by Meral FB, Cavkaytar A (2012)¹⁰. Findings concluded that most important predictors of the social support perception were the social support resources formed by family, friends or significant others and household income per month is the secondary predictor of social support perception of parents.

Present study showed overall good resilience among families of children with autistic spectrum disorder. Similar study was conducted by Bekhet AK, Norah L. Johnson LN, Zauszniewski JA (2012)¹¹showed that parents of children with ASD who possess indicators of resilience are better able to manage the adversity associated with caring for children with ASD.

Study revealed that “Optimism was reported by the majority of the care givers of children with Autistic Spectrum Disorder (88.63%) as more positively domain of family resilience. Similar findings were observed in a study conducted by Ekas, Llickenbrock, Whitman (2010)¹²in which optimism was associated with increased positive outcomes and decreased negative outcome among mothers of children with Autistic Spectrum Disorder.

In present study 65.5% care giver’s familes of children shows togetherness and adaptation as resilience (65.5%). Similar findings were observed in a study conducted by PisulaE, Kossakowska Z (2010)¹³in which the parents of children with autism the sense of coherence level was positively associated with seeking social support and self-controlling. Present study explored that 41% families openly communicate about their problem with friends/relatives and neighbors (41%), family show togetherness and adaptation (65.6%) and maintain a positive outlook (75.4%). Similar findings were observed in a study conducted by Greeff PA, Walt JK (2010)¹⁴in which : a supportive family environment, including commitment and ﬂexibility; family hardiness; internal and external coping strategies; a positive outlook on life; and family belief systems were identified as a resilience.

Present study revealed that family members understand and support each other (70.5%), feel good when their friends let them know what they can do in particular crisis (82%) Similar findings were observed in a study conducted by Altiere JM (2009)¹⁵in which mothers perceived more social support from family and friends.

Present study revealed overall good resilience among families of children with autistic spectrum disorder. Similar findings were observed in a study conducted by John L. Sandens, Sam B. Morgan (2008)¹⁶ indicated that parents generally showed resilience in adjusting to the presence of a severely disabled family member.

Present study revealed that families /care givers get social support to deal with the child 72%. Findings are consistent with the study done by Dale E, Jahonda A, Knott F (2006)¹⁷reported that role of social support and the accessibility to support services significantly reduced maternal stress levels having child with autism.

In present study 75.4% families maintain positive outlook Similar findings were observed in a study conducted by Gupta. A, Singhal. N (2005)¹⁸in which positive perception leads to better quality of life for families.

IMPLICATIONS:

Nursing practice:-

· Nurse play a critical role in developing interventions that increase resilience as a means to decrease family stress and burden.

· Families and care givers can be helped by nurse to have up-to-date information on the developmental capacities and needs of their autistic child – physical, cognitive, emotional, moral and spiritual.

· Nurse provide counseling to the parents to deal with their personal feelings and couple relationship issues.

Nursing administration:

· Nurse at administrative level can make necessary policies which enhance resilience and social support among families.

· Nurse administrator need to encourage health professionals to apply findings of present study for betterment of the families.

Nursing research:

· As nursing research becomes more grounded in research, the study will be a valuable reference material for future research.

· Nursing research should be conducted to explore the grounded lived experience of families with having children with mental disabilities.

LIMITATION:

Care givers may have answered the questions in a socially desirable way.

RECOMMENDATIONS:

Based on study limitations, there are several recommendations for future research

Ø On the basis of the findings a similar study can be carried out in different setting.

Ø Future studies should involve a larger and more diverse group of families.

Ø Observational study can be undertaken for an extended period of time.

Ø Further research is needed into the role of social support and the different types of social support.

CONCLUSION:

Autistic spectrum disorder is a developmental disability that can cause significant social, communication and behavioral challenges. When a child is diagnosed, it can affect relationship in the family (both marital and sibling relationship) and family routines and roles, and necessitate psychological adjustments for everyone. Therefore the empowerment of the caregivers is increasingly being recognized as a critical component of care interventions for children with ASD.

ACKNOWLEDGEMENT:

I would like to acknowledge the study participants for providing me their responses. My sincere thanks to all those who assisted me directly or indirectly in the successful completion of this study.

CONFLICT OF INTEREST:

The study entitled “ Family Resilience and Perceived Social Support Among Care Givers of Children With Autistic Spectrum Disorder” is self-funded research work of Ms. Meenakshi.

REFERENCES:

1. St. NE, Washington. Parents and caregivers are essential to children’s healthy development. American Psychological Association. 2017. Available from URL : www.apa.org

2. Hoefmon R, Payakachat N, Tilford MJ. Caring for a child with autism spectrum disorder and parents quality of life: Application of the carer quality of life. Journal of autism and developmental disability.2014 Aug;44(8):1933-45

3. Abraham P, Greeff, Walt JK. Journal of education and training in autism and developmental disability.2010;45(3):347-55

4. Black K, Lobo M, .A conceptual review of family resilience factors. Journal of family therapy. 25(3). 263-84

5. Sippel ML, Pietrzak HR, Charney SD, Mayes CL, Suuthwick MS. How does social support enhance resilience in the trauma exposed individual: Understanding human resilience in the context of inter-connected health social system. Ecology and society.2015 Oct ; 20(4)

6. Heydari A, Shahidi HL, Mohammadpour A. Spiritual journey in mothers lived experience of caring for children with autistic spectrum disorder. Global journal of health science. 2015; 7(6): 79-87

7. Tripathi N. Parenting style and parents level of stress having children with autistic spectrum disorder. Journal of Neuropsychiatry. 2015Dec. Available from URL: www.neuropsychiatry.imedpub.com

8. Kapp L, Brown O. Resilience in families adapting to autistic spectrum disorder. Journal of psychology in Africa. 2014 May 1; 21(3):459-463

9. N Ruiz, Robledillo, Garcia DS, Blasco PJ, Bono GE, Albiol ML. Highly resilient coping entails better perceived health, high social support, and low morning cortisol levels in parents of children with autistic spectrum disorder.2014

10. Meral FB, Cavkaytar A. A study on social support perception of parents who have children with autism. International journal on new trends in education and their implication. 2012 July; 3(3):1-12

11. Bekhet AK, Norah L. Johnson LN, Zauszniewski JA. Resilience in family resilience of person with autistic spectrum disorder. Journal on issue in mental health nursing.2012; 33(10).

12. Ekas NV, Lickenbrock DM, Whitman TL. Optimism, social support and well being in mothers of children with autistic spectrum disorder. Journal of autism and developmental disorder. 2010 Oct; 40(10):1274-1284 Doi-1007/s10803-0-10-086-y

13. PisulaE, Kossakowska Z. Sense of coherence and coping with stress among mothers and fathers of children with autism. Journal of autism and developmental disorders.2010 Dec; 40(12):1485-1494

14. Greeff PA, Walt JK. Resilience in family with autistic child. Journal of education and training in autism and developmental disability.2010;45(3):347-355

15. Altiere JM.Family functioning and coping behaviors in parents of children with autism. Journal of child and family studies. 2008 April 21; 18 (83).

16. John L. Sandens, Sam B. Morgan. Family stress and adjustment as perceived by parents of children with autism or down syndrome. Journal of child and family welfare behavior therapy. 2008 Oct 12:15-32

17. Dale E, Jahonda A, Knott F. Mother’s attributions following their child’s diagnosis of autistic spectrum disorder. The national autistic society.2006 10(5), 463-479

18. Gupta. A, Singhal. N. Psychosocial support for families of children with autism. Asia pacific disability rehabilitation journal.2005; 16(2).

Received on 28.11.2017 Modified on 18.12.2017

Asian J. Nursing Education and Research. 2018; 8(1): 51-56.

DOI: 10.5958/2349-2996.2018.00012.5

Disease characteristics (child)		Perceive family resilience		Chi²	P- value
		<M (f) (%)	>M (f) (%)
Major area of functional disabilities	Speech	26 (54.16)	22 (45.83)	7.605	0.022*
	Cognition	5 (71.42)	2 (28.57)
	Behavioral	0 (0)	6 (100)

Socio demographic characteristics		Perceived social support		Chi²	P- value
Socio demographic characteristics		<M (f) (%)	>M (f) (%)
Income (monthly)	Less than 10000	5(50)	5 (50)	9.583	0.048*
	10001- 20000	8(44.44)	10 (55.55)
	20001-30000	49(90.7)	5 (9.25)
	30001-40000	0 (0)	5 (100)
	Above 40000	14 (73.68)	5 (26.31)
Drug used by mother (antenatal period)	Yes	5 (100)	0 (0)	5.271	0.022*
Drug used by mother (antenatal period)	No	26 (46.42)	30 (53.57)	5.271	0.022*